Manishi Khatter thought she was through the worst of it. After being diagnosed with breast cancer, she had a lumpectomy and radiation, finishing her treatment just before Christmas in 2023.
Then, in January, she noticed her left breast and chest wall felt swollen. It could have been slow healing, but Khatter – a family doctor who works in women’s health – suspected something worse.
By March the upper part of her left arm was swollen too, and she knew – it was lymphedema, a chronic and debilitating condition that affects 1.25 million Canadians, most of them cancer survivors.
“My first reaction was, ‘There must be a solution, this isn’t going to be my life forever.’ Then I started to realize, ‘OK, maybe it is, because this is long term,'” Khatter recalls.
“When you have cancer you’re just trying to survive, but lymphedema is one of the things that doesn’t go away.”
Khatter had already signed up for the Alberta Cancer Exercise program run by Margaret McNeely, University of Alberta professor of rehabilitation medicine, adjunct in oncology and director of the U of A’s cancer Rehabilitation Clinic. McNeely also leads a nationwide project to update Canada’s lymphedema treatment guidelines.
Now McNeely is heading up the new Lymphedema Research and Training Program, part of the recently established Dianne and Irving Kipnes Health Research Institute. It will focus on early detection and intervention, filling a desperately needed gap in research and clinical treatment options for people like Khatter.
“We can’t prevent lymphedema, but we can monitor it closely – especially for high-risk people who’ve had more surgery or more advanced breast cancer – and at the first signs of swelling we can start treatment,” McNeely says. “Our aim is to reduce the swelling and support the lymphatic system to get back on track.”
Numbers on the rise
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A healthy lymphatic system delivers nutrients and white blood cells throughout the body and carries away debris and harmful substances by filtering them through the lymph nodes. When lymph flow is blocked, fluid builds up, causing painful swelling (edema) that can lead to increased risk of infection.
It can happen anywhere in the body,depending on where the damage is. Secondary lymphedema can occur following treatment for breast, gynecological, and head and neck cancers, and also melanoma. Primary lymphedema is when a person is born with a damaged lymph system.
Khatter did not have high-risk factors like obesity, diabetes or a sedentary lifestyle. But she did have surgery on a tumour and some lymph nodes under her arm, as well as radiation.
Less-damaging surgical methods are available, but with improved cancer detection and more people surviving, lymphedema case numbers are on the rise, according to the Canadian Lymphedema Framework.
Despite this, there’s a lack of research into the best ways to treat lymphedema, says McNeely.
Mental and physical exhaustion
McNeely’s best advice – and Khatter’s own instinct – was to see a physiotherapist right away.
Khatter was willing to try almost anything
new Institute Aims to Revolutionize Lymphatic Disease Research and Care
The recently established Kipnes Institute for the Study of Lymphatic Disorders at Northwestern University is poised to become a leading center for research, diagnosis, and treatment of lymphatic diseases. Led by Dr. Spencer Gibson, the Dianne and Irving Kipnes Chair in Lymphatic Disorders, the institute seeks to foster collaboration across disciplines to improve patient outcomes. This initiative arrives at a critical time, as lymphatic disorders ofen go undiagnosed or are mismanaged, impacting millions worldwide.
Understanding the Challenges of Lymphatic Diseases
Lymphatic diseases encompass a wide range of conditions affecting the lymphatic system, a crucial network responsible for immune function, fluid balance, and waste removal. These disorders can manifest in various ways, including lymphedema (swelling due to lymphatic blockage), lymphangitis (inflammation of lymphatic vessels), and lymphatic cancers. Early detection and effective management are key to improving quality of life for those affected.
“We need to do better at early detection and management, and get the knowledge and education to the people who need it,” says Dr. Khatter, a patient who exemplifies the potential impact of improved lymphatic care.
A Multi-Disciplinary Approach to Research
Dr. Gibson’s research focuses on unraveling the molecular mechanisms underlying lymphatic dysfunction. Beyond the well-established genetic factors, she is investigating the roles of oxidative stress – an imbalance between free radicals and antioxidants – and lipid toxicity associated with fatty acids in the progress of these diseases.
The Kipnes Institute’s strength lies in its commitment to interdisciplinary collaboration. Dr.Gibson envisions a network connecting basic scientists, clinicians, radiologists, nutritionists, occupational therapists, exercise scientists, and psychosocial oncologists. This collaborative environment aims to translate research findings into tangible improvements in patient care.
The Vision for the Kipnes Institute
The Institute’s goal extends beyond simply treating symptoms. It aims to create a comprehensive ecosystem of care, encompassing:
* Advanced Diagnostics: Developing more accurate and earlier detection methods for lymphatic disorders.
* Personalized treatment Plans: Tailoring therapies to individual patient needs based on genetic and molecular profiles.
* Rehabilitation and Support: Providing comprehensive rehabilitation programs and psychosocial support to improve quality of life.
* Education and Outreach: Disseminating knowledge and raising awareness about lymphatic diseases among healthcare professionals and the public.
Key Takeaways
* The kipnes Institute for the Study of Lymphatic Disorders at Northwestern University is a new center dedicated to advancing lymphatic disease research and care.
* Dr. Spencer Gibson is leading research into the molecular causes of lymphatic disorders, including oxidative stress and lipid toxicity.
* The Institute emphasizes a collaborative, multi-disciplinary approach to improve diagnosis, treatment, and patient support.
* Early detection and management are crucial for improving outcomes for individuals with lymphatic diseases.
The Kipnes Institute represents a significant step forward in the fight against lymphatic diseases. By fostering collaboration and innovation,it promises to transform the landscape of lymphatic care and offer hope to millions affected by these often-overlooked conditions. Future research will focus on translating these discoveries into clinical trials and ultimately, improved therapies for patients.